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Epilepsy organizations could benefit from the lessons of a systems of care approach

September 21, 2012

princessGuest blogger – Princess Katana Did you know that 1 in 26 Americans will develop epilepsy at some point in their lifetime? That this makes epilepsy one of the nation’s most common neurological disorders, along with migraine, Alzheimer’s disease and stroke? Or that most of the 150,000 people that will be newly diagnosed with epilepsy will be children and older adults? Since I started working at the Epilepsy Foundation I’ve learned that most people don’t know much about epilepsy, and many still believe some of the century old myths about the condition, like that a person who is having a seizure can swallow his/her tongue. This is NOT true, and inserting an object like a spoon or another hard object into a person’s mouth can cause serious injuries to the teeth and gums.

Epilepsy is a medical condition that produces seizures affecting a variety of mental and physical functions. When a person has two or more unprovoked seizures, they are considered to have epilepsy.  A seizure happens when a brief, strong surge of electricity affects part or all of the brain. Seizures can last from seconds to a few minutes. People with epilepsy can have many symptoms, from convulsions and loss of consciousness to blank staring, lip smacking, or jerking movements of arms and legs.

As the new Director of Multicultural Affairs for the Epilepsy Foundation, I read the 2012 Institute of Medicine (IOM) report Epilepsy across the Spectrum with great interest. It recognizes epilepsy as a spectrum of disorders that involves more than 25 syndromes, affecting not only people living with epilepsy, but their families and communities. For the person with epilepsy the condition means much more than living with unpredictable seizures, it means facing a myriad of challenges at home, in school and at work; it means uncertainties about developing friendships and relationships, and questions about the ability to drive a car and to live independently.  The report examines the range of community services –day care and school, employment, transportation, housing, sports, recreation and other support services- that impact the quality of life of people with epilepsy and their families. I thought: the epilepsy world would benefit from a Wraparound approach to service delivery. Here are a few reasons why:

  • People who have epilepsy span a spectrum than includes children, youth, men and women of all ages and of all socioeconomic backgrounds, races and ethnicities, who live in all areas of the United States and across the world. At least 1 in 100 adults and 1 in 20 children will suffer recurrent and unpredictable seizures that vary in type, cause and severity and often have significant neurological, cognitive and psychiatric impact. Wouldn’t it be great to have access culturally and linguistically competent approaches to service delivery?
  • Children with epilepsy are frequently described as worried, fearful and solitary. Studies recognize the stigma associated with epilepsy as a significant contributor to children and youth experiencing embarrassment, fear, or shame of their seizures (Asato et al., 2009), leading to the increased anxiety, depression, social withdrawal and low self-esteem that often results in efforts to conceal their condition. Parents of children and youth with epilepsy often report high levels of psychological distress and poor quality of life. In a qualitative study by Aytch et al (2001) parents spoke about how their child’s seizures affected their day to day functioning, including their family activities outside the home and how they organize plans.  Wouldn’t it be great for youth who are facing these challenges to connect with youth in system of care communities in near their homes?
  • The IOM report recognizes epilepsy as common and complex neurological disorder that affects health and quality of life; that even when there are effective treatments for many types of epilepsy, for many they are not easily accessible; that the most effective treatment strategies require a patient centered approach; that many health professionals need to be better informed about epilepsy; and that efforts to inform and educate people with epilepsy and their families about the condition must respond to their culture and health literacy.  The report emphasizes that improving the quality of life of people with epilepsy and their families will require access to high quality care that facilitates accurate diagnosis, effective treatment and self-management of the condition. It notes that even when there have been advances in the development of treatments with less adverse side affects and devices and surgical techniques used to treat certain types of epilepsy have been refined, there is still much left to do to eliminate the disparities in access to care for certain populations, to reduce the delays in diagnosis and referrals to higher levels of care, as well as to improve the treatment of patients with refractory epilepsy. Wouldn’t it be great families to connect with family organizations in their state to develop a stronger voice in advocacy for high quality care?
  • The Epilepsy Foundation, an organization dedicated to people living with epilepsy, their families and caregivers, and its affiliates across the country are reviewing the findings and recommendations of the IOM report and exploring potential partnerships with private and public organizations across the country to develop strategic approaches that effectively respond to the complex needs of children, youth, adults and older adults with epilepsy and their families, to improve quality of life through effective  management of epilepsy and its co-occurring disorders.

It seems to me that epilepsy organizations across the country could benefit greatly from what the system of care communities have been able to accomplish over the past 20 years. I know that children and youth with epilepsy and their families face many of the same challenges, including stigma, that children and youth with mental health needs and their families face, including mental health needs. Oh, and I haven’t even mentioned psychogenic non-epileptic seizures yet… well that is for another day.

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